Boy Alone,a Memoir by the Brother of A Boy Named Noah
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I was very excited to find Boy Alone (Karl Taro Greenfeld from Harper Collins) on the remainder table at Barnes and Noble. That, in spite of the fact it was the Union Square Store in Manhattan and I would be dragging it with me cross-country. I read reviews when it first came out in 2009, and blogged on an article by the author, Karl Taro Greenfeld on Jenny McCarthy and vaccine hysteria in Time Magazineon this website.
It got me a lot of traffic (and angry responses.) I wanted to read and review Boy Alone.
A Fearless Account of a Difficult Family Challenge
The author, Karl Taro Greenfeld, was the older brother of Noah Greenfeld, who became famous as the subject of three books by his father, Josh Greenfeld, including A Boy Called Noah. It became a sensation of sorts, and reading reviews in 1972 was my first conscience memory of learning about autism. It was the year I graduated from the University of Pittsburgh, a time when the prevalence of autism was one in 10,000. That has changed significantly, rising to something like one in 100 (depending on whose data you are citing, anywhere from one in 38 [Korean study] to one in 110[CDC].) The debate has raged about whether it is better diagnostic regimes, better informed doctors or the rise in the "desirability" of autism (as opposed to a diagnosis of mental retardation, also known by the sensitive as an "intellectual disability.") Still, the contribution of these factors can at best account for only a part of the rise in prevalence.
It is increasing, and it's meaning for public education and our communities as these young men (mostly) and women reach adulthood is significant. It is a question that Karl leaves us with.
When this book was released, it generated both heat and smoke. Some people in the Autism community were incensed: they believed that Karl had thrown his parents "under the bus," (an increasingly popular phrase among the whiners) and took Karl to task for being so insensitive to his brothers disability and ungrateful for just being typical.
What I read was a brutally honest and at the same time loving account of a young man's view of his family's struggles to deal with a low functioning, highly challenging son and sibling with autism, at a time when little was known about either the disability or effective means of dealing with it. Online I found an article from a 1965 Life Magazine at Neuro-diversity that described children with autism as "Far Gone Mental Cripples." Huh? On the other side, Bruno Bettelheim, at the time one of the Americas best known and most highly regarded childhood psychoanalysts (now reputed to have been a fraud) blamed the mothers, calling them "refrigerator mothers." It was into this whirling field of undefined practice and wishful thinking therapies that Noah Greenfeld was born to a Jewish writer from Brooklyn and a Japanese Artist.
Karl and Noah's parents, Josh and Foumi, struggled with what Noah's Diagnosis would mean for them. They sought to find someone, somewhere to find treatment, and dedicated a great deal of their lives and human capital in getting Noah what they believed he needed. Certainly, both parents had their idiosyncrasy that may have contributed to the often tense and difficult family dynamics. Still, Josh's intellect and Foumi's determination were instrumental in helping them find the best resources available and to advocate often against the prejudices and intransigence of the "experts."
A Challenging Brother
Noah's parents remember him speaking before the age of two, but it is not a memory that Karl shares. Perhaps he is the realist, that what his parents heard as speech was not really that, but only wishful thinking. Yet the other memories his brother has of his development rings true of a child, like Noah, with very low function. He liked to stimm with rubber bands and string, he would make repetitive sounds, and he never quite mastered toilet training, often needing Karl's help when he needed to be "wiped."
Like many children with autism, Noah liked to get what he wanted. He would pinch, pull hair or head bang in order to get what he wanted. And he had tantrums: loud, vociferous,emphatic tantrums.
Josh Greenfeld supported his family by writing, often for Life Magazine. In the course of writing about director/producer Paul Mazursky, he learned about the Lovaas Institute, where Ivar Lovaas was doing pioneering work in what was to become Applied Behavior Analysis, based on the work of B.F. Skinner. Early on, aversives, including slapping, pinching and even electric shocks, were practiced as part the reinforcement schedule. Lovaas' own research was later to conclude that aversive reinforcement were ineffective, that as soon as the person who administered the aversives left the room, the unwanted behavior would reappear. The Greenfelds moved the family to be closer to the Lovaas institute, moving to Los Angeles where Josh Greenfeld would begin a career as a screenwriter, writing such hits as Harry and Tonto, and God II.
Noah was to become a "failure" of the Lovaas program. In the course of going from school to school, and program to program, Noah failed to learn and gain the skills he needed to truly understand his world. Karl, however, became and incredible judge of the people who worked with Noah. He notes that some are in it for an opportunity to advance their careers, some are almost afraid to get too close to him to him, and others, the good ones, get right down with him, into his space, and have a natural acumen for working with Noah.
Karl was expected to help our in caring for his brother. As he got older he would babysit. Frighteningly, it was often stoned. Karl struggled to find himself, to make his own way, and found that he had no gift for athletics, for academics, and as a Japanese Jewish American, he did not fit among the blond surfers of Pacific Palisades, the community where his family settled on the West Coast. While in middle school he kept his head above water by inventing a rich life of imaginary battles, an imaginary Risk game that found it's map all over his home.
Karl is brave in examining his own flaws, as well as those of his parents and of course, the ongoing challenge that Noah offered. He succeeded, in the end, in conquering his addictions and finding his voice, like his father as a writer.
Still, the single ongoing challenge for the Greenfeld family, was "What about Noah?" They knew the answer would in the end be to find a residential setting. Josh and Foumi found either that the group homes or institutions would not accept Noah because of the level of his function, or that the facilities did not meet his parents standards. Josh had suffered an early (at 53) heart attack and was concerned that the stresses of keeping Noah in their home might prove fatal for him.
A Fantasy of Hope
The decision is finally made when Noah is 14: he is to go to the Behavior Modification Institute, a group home and facility for children on the spectrum. It was recommended by another parent near their home in Pacific Palisades. They will take Noah. But Noah begins to come home with bruises. The Greenfelds have not authorized aversives, but after a while the school threatens to expel Noah if they do not have the ability to use the tools they felt were important to manage Noah's behavior. These tools included withholding food, slapping and other aversives.
At this point Karl flashes forward to the future he imagined for Noah. He flies to visit Karl and his family in Hong Kong. He has successfully learned to use language through assisted communication training, using both Picture Exchange Symbols and American Sign Language.
This section of the book leaves memoir behind and replaces it with fiction, yet it is well researched and reflects the beliefs I have developed as a teacher of children with autism: communication is the key. Communication needs to be supported in any and all ways that will help a child succeed.
My understanding of the success of assisted communication made the true outcome, a continuing spiral of placements, of intensifying self injurious behaviors and of victimization, all that much more bitter. Autism programs are succeeding in helping many students with severe developmental disabilities to improve their function in the community.
My Recommendation - Read this Book and Share It.
This is an extraordinary resource. Yes, it is at times a tough read. Karl did not sugar coat the pressure caring for Noah placed on his parents, nor did he ignore the fact that strong personalities and preferences shaped how his parents dealt with Noah and how they shaped the outcome.
Still, this is a powerful book, that tells a single family's struggles to help their autistic family member succeed. It is not a happy program for creating a happy, typical family. Every family will have it's own strengths and its own unique challenges
Not only did I buy this book: I went out and bought 2 more (at the overstock price) so I can have extras to lend to people who need to understand the challenges faced by families with children with autism. I'm surprised, that with all there is out there about autism, how many people ask my questions like "Where does autism come from?" or "I heard that if you give young enough students this treatment (ABA, I think), they will look just like typical children."
I was very excited to find Boy Alone (Karl Taro Greenfeld from Harper Collins) on the remainder table at Barnes and Noble. That, in spite of the fact it was the Union Square Store in Manhattan and I would be dragging it with me cross-country. I read reviews when it first came out in 2009, and blogged on an article by the author, Karl Taro Greenfeld on Jenny McCarthy and vaccine hysteria in Time Magazineon this website.
It got me a lot of traffic (and angry responses.) I wanted to read and review Boy Alone.
A Fearless Account of a Difficult Family Challenge
The author, Karl Taro Greenfeld, was the older brother of Noah Greenfeld, who became famous as the subject of three books by his father, Josh Greenfeld, including A Boy Called Noah. It became a sensation of sorts, and reading reviews in 1972 was my first conscience memory of learning about autism. It was the year I graduated from the University of Pittsburgh, a time when the prevalence of autism was one in 10,000. That has changed significantly, rising to something like one in 100 (depending on whose data you are citing, anywhere from one in 38 [Korean study] to one in 110[CDC].) The debate has raged about whether it is better diagnostic regimes, better informed doctors or the rise in the "desirability" of autism (as opposed to a diagnosis of mental retardation, also known by the sensitive as an "intellectual disability.") Still, the contribution of these factors can at best account for only a part of the rise in prevalence.
It is increasing, and it's meaning for public education and our communities as these young men (mostly) and women reach adulthood is significant. It is a question that Karl leaves us with.
When this book was released, it generated both heat and smoke. Some people in the Autism community were incensed: they believed that Karl had thrown his parents "under the bus," (an increasingly popular phrase among the whiners) and took Karl to task for being so insensitive to his brothers disability and ungrateful for just being typical.
What I read was a brutally honest and at the same time loving account of a young man's view of his family's struggles to deal with a low functioning, highly challenging son and sibling with autism, at a time when little was known about either the disability or effective means of dealing with it. Online I found an article from a 1965 Life Magazine at Neuro-diversity that described children with autism as "Far Gone Mental Cripples." Huh? On the other side, Bruno Bettelheim, at the time one of the Americas best known and most highly regarded childhood psychoanalysts (now reputed to have been a fraud) blamed the mothers, calling them "refrigerator mothers." It was into this whirling field of undefined practice and wishful thinking therapies that Noah Greenfeld was born to a Jewish writer from Brooklyn and a Japanese Artist.
Karl and Noah's parents, Josh and Foumi, struggled with what Noah's Diagnosis would mean for them. They sought to find someone, somewhere to find treatment, and dedicated a great deal of their lives and human capital in getting Noah what they believed he needed. Certainly, both parents had their idiosyncrasy that may have contributed to the often tense and difficult family dynamics. Still, Josh's intellect and Foumi's determination were instrumental in helping them find the best resources available and to advocate often against the prejudices and intransigence of the "experts."
A Challenging Brother
Noah's parents remember him speaking before the age of two, but it is not a memory that Karl shares. Perhaps he is the realist, that what his parents heard as speech was not really that, but only wishful thinking. Yet the other memories his brother has of his development rings true of a child, like Noah, with very low function. He liked to stimm with rubber bands and string, he would make repetitive sounds, and he never quite mastered toilet training, often needing Karl's help when he needed to be "wiped."
Like many children with autism, Noah liked to get what he wanted. He would pinch, pull hair or head bang in order to get what he wanted. And he had tantrums: loud, vociferous,emphatic tantrums.
Josh Greenfeld supported his family by writing, often for Life Magazine. In the course of writing about director/producer Paul Mazursky, he learned about the Lovaas Institute, where Ivar Lovaas was doing pioneering work in what was to become Applied Behavior Analysis, based on the work of B.F. Skinner. Early on, aversives, including slapping, pinching and even electric shocks, were practiced as part the reinforcement schedule. Lovaas' own research was later to conclude that aversive reinforcement were ineffective, that as soon as the person who administered the aversives left the room, the unwanted behavior would reappear. The Greenfelds moved the family to be closer to the Lovaas institute, moving to Los Angeles where Josh Greenfeld would begin a career as a screenwriter, writing such hits as Harry and Tonto, and God II.
Noah was to become a "failure" of the Lovaas program. In the course of going from school to school, and program to program, Noah failed to learn and gain the skills he needed to truly understand his world. Karl, however, became and incredible judge of the people who worked with Noah. He notes that some are in it for an opportunity to advance their careers, some are almost afraid to get too close to him to him, and others, the good ones, get right down with him, into his space, and have a natural acumen for working with Noah.
Karl was expected to help our in caring for his brother. As he got older he would babysit. Frighteningly, it was often stoned. Karl struggled to find himself, to make his own way, and found that he had no gift for athletics, for academics, and as a Japanese Jewish American, he did not fit among the blond surfers of Pacific Palisades, the community where his family settled on the West Coast. While in middle school he kept his head above water by inventing a rich life of imaginary battles, an imaginary Risk game that found it's map all over his home.
Karl is brave in examining his own flaws, as well as those of his parents and of course, the ongoing challenge that Noah offered. He succeeded, in the end, in conquering his addictions and finding his voice, like his father as a writer.
Still, the single ongoing challenge for the Greenfeld family, was "What about Noah?" They knew the answer would in the end be to find a residential setting. Josh and Foumi found either that the group homes or institutions would not accept Noah because of the level of his function, or that the facilities did not meet his parents standards. Josh had suffered an early (at 53) heart attack and was concerned that the stresses of keeping Noah in their home might prove fatal for him.
A Fantasy of Hope
The decision is finally made when Noah is 14: he is to go to the Behavior Modification Institute, a group home and facility for children on the spectrum. It was recommended by another parent near their home in Pacific Palisades. They will take Noah. But Noah begins to come home with bruises. The Greenfelds have not authorized aversives, but after a while the school threatens to expel Noah if they do not have the ability to use the tools they felt were important to manage Noah's behavior. These tools included withholding food, slapping and other aversives.
At this point Karl flashes forward to the future he imagined for Noah. He flies to visit Karl and his family in Hong Kong. He has successfully learned to use language through assisted communication training, using both Picture Exchange Symbols and American Sign Language.
This section of the book leaves memoir behind and replaces it with fiction, yet it is well researched and reflects the beliefs I have developed as a teacher of children with autism: communication is the key. Communication needs to be supported in any and all ways that will help a child succeed.
My understanding of the success of assisted communication made the true outcome, a continuing spiral of placements, of intensifying self injurious behaviors and of victimization, all that much more bitter. Autism programs are succeeding in helping many students with severe developmental disabilities to improve their function in the community.
My Recommendation - Read this Book and Share It.
This is an extraordinary resource. Yes, it is at times a tough read. Karl did not sugar coat the pressure caring for Noah placed on his parents, nor did he ignore the fact that strong personalities and preferences shaped how his parents dealt with Noah and how they shaped the outcome.
Still, this is a powerful book, that tells a single family's struggles to help their autistic family member succeed. It is not a happy program for creating a happy, typical family. Every family will have it's own strengths and its own unique challenges
Not only did I buy this book: I went out and bought 2 more (at the overstock price) so I can have extras to lend to people who need to understand the challenges faced by families with children with autism. I'm surprised, that with all there is out there about autism, how many people ask my questions like "Where does autism come from?" or "I heard that if you give young enough students this treatment (ABA, I think), they will look just like typical children."
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